We’ve Moved!

Our new blog can be found at www.navigatingcancer.com/blog.

Support Made Easy

There have been a number of blog posts this month about Cleaning For A Reason, a non-profit organization that sets up free housecleaning for women undergoing treatment for cancer. Despite its exclusion of men, this is a phenomenal service that is desperately needed.

How it works: The application process opens at 12noon Central Time, Monday through Thursday, and they accept a maximum of 50 applications each day. However, the demand is such that they accept approximately 8 applications a minute once it’s activated. Therefore, the application process is open for approximately 6 minutes.

Everyone agrees: this is needed. Cancer patients love it, families benefit. A clean, organized space is something you deserve to come home to after a day in chemotherapy. It’s good for your health, it’s great for your family, and it’s a load off the mind. But if more than 50 people need this help per day – as indicated by the six-minute time window you have to sign up – then we should be doing all we can to get more cleaning services to donate their time. Instead of helping less patients, let’s rally more support.

Find your state. See who partners with this program. It could be as easy as calling the cleaning services not on the list and explaining how they can help. The main requirements are being licensed or bonded, and doing background checks on employees and volunteers.

From different perspectives, there are different solutions. If you don’t want to rally the cleaning troops, you can offer to clean someone’s house as a more personal donation – or pair up with a friend and tackle it together. Either way, you’re meeting the need of a cancer patient who truly needs, wants, and appreciates it.

Don’t have time for cleaning, but still want to help? Check out ChemoAngels.net. There are different levels of commitment – Chemo Angel, Card Angel, Support Angel. There is an application process and you must be approved, which usually takes two weeks to a month. You’re matched with someone starting IV chemotherapy, and send them weekly things – gifts, cards, flowers, you name it – to delight or distract them. As a Card Angel, I send my patient 1-2 cards per week knowing it’s a one-way street. I print out funny cartoons, send doodles, share my (positive) experiences, and cheer her on in every way I can. It takes very little time to make someone’s day.

From the Navigating Cancer website also comes a logistical way to help those with cancer. If you’re a patient, you can invite friends and family to view your calendar – or everyone on the site! – which includes your immediate needs. If you need a ride to an appointment, you can post that on your calendar, which notifies your supporters. If you need help cleaning house, or a birthday cake for your youngest, or maybe childcare for a hospital stay – those needs can be posted and filled by your support team. Asking for and receiving help should be this easy.

There are so many ways to support people going through chemo or living with cancer, and this is just a few. Find the one that works for you. The impact you have will change people’s lives… or at least make their lives more manageable.

How To Live A Life After Treatment?

Guest Blogger: Kairol Rosenthal

I was diagnosed with cancer at 27.  After treatment, I ditched my hospital gown and hit the road.  Traveling from the Big Apple to the Bible Belt, I recorded one-on-one conversations with 25 young adult cancer survivors who confessed to me experiences they had never shared with anyone else.

I was surprised by how many patients said that the hardest part of their cancer experience was life after treatment.  Here’s a snippet of my conversation with Geoff Luttrell, a twenty-something survivor interviewed in my book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“When you have cancer and you wake up every morning, man, you know what’s happening: chemo, scans, IVs, the whole protocol. Everything else just falls away. There’s no confusion. Life was perfectly clear on chemo. A lot of people recovering from cancer talk about trying to live life like there’s no tomorrow, but you have to work, you have to go grocery shopping, you can’t just walk around 24/7 thinking, I have to make the best of it because I could die in the next five minutes. It’s not realistic.”

Like Geoff, I wanted to be realistic about how to deal with the directionless fray my life had become after treatment.  Through my own trial and error, and while talking to other patients in my book Everything Changes, I’ve learned some lessons for transitioning from the treatment to life beyond:

Patient Reported Outcomes

I had an interesting conversation this week with Dr. Ethan Basch from Memorial Sloan Kettering.  He is a medical oncologist focused on prostate cancer and a leading researcher on the impact and value of patients reporting their treatment side effects and the impact that has on quality patient care.

Recently he received a grant from the NCI to create patient descriptions for the language that physicians use to report side effects in clinical trials.  This will be a meaningful step to help patients and physicians use the same language in reporting toxicities, which should improve patient/doctor communications and prove that patient self reporting ultimately improves patient care.

I was excited to speak to him and learn about his research and what he’s learned through the process.  It’s great to know there are physicians studying better methods to impact quality care and how to best engage patients in the process.  You can read more about his research here.

Clearly this is another example of the positive impact on quality care that can occur by having patients be an active participant in their care.  The paradigm is shifting and we at Navigating Cancer are excited to be a part of the movement.

New Features to the Daily Health Tracker

We’re excited to announce some exciting new features to the Daily Health Tracker to make it easier to keep track of your health. We’re passionate about giving you easy to use tools to keep track of how you’re feeling, your symptoms and side effects from therapy and the medications your taking so you can easily stay in control and communicate more effectively with your health care team. To do this, we’ve added the following features:

• Mini-Calendar - With the mini-calendar you can go directly to the day that you want to add your side effects, medications, and health notes. You can easily see which days you’ve taken your medications and when you’ve recorded your tracker entries.

• Health Notes – Now you can easily record how you’re feeling or something that’s happened that you want to keep track of. You can save multiple notes per day, which are time stamped so you know what time they happened.

Coming soon, your health notes will be included in your Prepare for Doctor Visit report. We’d love to hear from you about how this report is helping you prepare for your doctor visits and communicate more effectively with your healthcare team.

Thanks to each of you for your continued support and feedback. We’re listening so keep the feedback coming!

- The Navigating Cancer Team

World Cancer Day

Backed by the International Union Against Cancer and the World Health Organization, February 4th has been named World Cancer Day. Cancer is becoming increasingly preventable but when it’s not, we want patients to be able to take control of their care. At Navigating Cancer, we are committed to help patients navigate their journey by providing the tools and resources necessary to partner with their doctors.

With our launch just two weeks ago, we are excited to announce that thousands of patients have accessed Navigating Cancer! Our goal for you is to have a copy of your own health record. With a cancer diagnosis, you will see a number of healthcare providers in a variety of settings and locations. Some of the time, your providers might not have all the information about your care. You should know your treatments, your lab results, and the basic information for your care. This will help you communicate more effectively with your healthcare team.

Organizing your care has never been so easy, with Navigating Cancer,  we believe these three main components will empower you as a patient:

• Your own health record: Create a secure record of your treatments and medications including surgeries, radiation, chemotherapy and other treatments.
• Daily Health Tracker: Easily track your health and side effects to better understand what’s happening and help you manage your condition.
• Prepare for appointments:  Maximize the time you spend with your doctor and communicate your issues more effectively by using our reports

Since our launch, not only have patients been tracking their health but they have also been providing us feedback. We’re looking forward to continuing to learn from patients so we can create the most useful application to help patients keep track of their health and more effectively partner with their healthcare team.

Log onto www.navigatingcancer.com today to begin and stay tuned as we continue to update you on our progress!

What people are saying about Navigating Cancer

Interested in what people are saying about Navigating Cancer after our launch this week? Click on the links below to find out!

Venture Beat – New site helps cancer patients network, improve treatments

The Badass Geek – In Which I Give a Shout Out

Death by Lettuce – Noteworthy: Navigating Cancer

Projectline – Launching a New Community: An Interview with Navigating Cancer’s Community Manager

The Accidental Tourist – Navigating Cancer Has Launched!

Tech Oat – New site helps cancer patients network, improve treatments

The Launch of Navigating Cancer

Navigating Cancer has launched! We’re excited about being publicly available for cancer patients, survivors and their friends and family to better manage an overwhelming cancer diagnosis.

Overwhelmed! What we continue to hear from patients is that a cancer diagnosis is overwhelming. Navigating Cancer is here to help! Whether it’s reading about the experiences of others, learning about your disease, keeping track of your treatments, or using our tracking reports to better communicate with your doctor, we hope Navigating Cancer helps you feel more in control throughout your cancer journey.

We would like to take this opportunity to thank the hundreds of patients, survivors and supporters over the past several months who tested our application and provided us feedback, encouragement and support as we built Navigating Cancer. We couldn’t have done it without you!

We’d also like to thank the many cancer bloggers who have supported us, provided feedback and have written about us. You can read their comments here.

Thanks also to our partners who are providing important information and resources to specific patients groups on Navigating Cancer including GRACE, Caring for Carcinoid Foundation, The Prostate Net, and Cancer Lifeline.

So what’s next? Our priorities moving forward are to continue to refine the site to build the best possible user experience for patients. We will also be working with a few cancer clinics to explore how we can further support your interactions with your healthcare team so that they can provide you the best care.

Most importantly, please provide us feedback! We’re listening and we’re here to help. Today is just the beginning of our journey…thanks for taking the first steps with us!

The Navigating Cancer Team

For more information, view our press release.

Happy New Year

Happy New Year from Navigating Cancer!  We’d like to thank you for your support, guidance and feed back over the last several months as we’ve been buildingNavigating Cancer. We couldn’t have done it without you!

We will be launching our public site mid January and we need your help. If you haven’t done so yet, please share your experiences, resources and documents that you’ve found helpful in your journey. The development of Navigating Cancer’s community is vital as we begin having more and more users coming to the site and your story will help other patients, survivors and supporters. To begin sharing your story, click on the Share Your Story link above and log in.

As we prepare for launch, please send us your feedback on how we can improve. If you see spelling errors, have trouble entering your information or have pages that don’t work, send an email to feedback@navigatingcancer.com. We are really excited about the possibilities in 2010 of helping cancer patients and their loved ones better manage and navigate their care.

Thank you for being a part of our journey!

An Update from Navigating Cancer

Easier Access To All Of  Your Information

I’m sure you’ve noticed a big change to the Navigating Cancer Beta Site. There’s a totally new way to navigate the site.

Previously, your personal information on Navigating Cancer was accessible in two places – the Share menu and the Manage menu. The Share section contained your profile page (My Page), your private messages inbox and calendar, while the Manage section held information about your cancer treatments, medications and care team. We heard from our beta testers that navigating multiple areas of the site to review your information was not ideal.

In this newest version, we’ve integrated these two areas of the site into a single tab called “My Organizer”. Now, all of your information on Navigating Cancer is available to you in one place. The menu in your organizer makes it easy for you to view your personal information, your treatments, care team contact details, profile page, documents, recommendations and other information all without leaving “My Organizer”.

Cancer Information From The National Cancer Institute

To the right of the “My Organizer” tab, you’ll notice a second tab called “Cancer Resources”. This area of the site provides quick access to all of the community features you’re familiar with from the previous version including: Groups, Discussions and Shared Experiences. In addition, the Cancer Resources tab introduces a new feature for Navigating Cancer members – cancer information from the National Cancer Institute; organized into categories for easier access to the information you’re looking for.

We’ve also made it easier to discover Groups and other community resources by highlighting the most useful information (as rated by members) available right next to the cancer articles.

Caregivers On Navigating Cancer

A notable new feature of this release is the ability to designate someone as a Caregiver for a patient. A Caregiver on Navigating Cancer is someone who has full permissions to add or edit information on behalf of a patient profile on Navigating Cancer. This makes it possible for a cancer patient to have a profile, keep in touch with their supporters, use the Daily Health Tracker to regularly record their condition and organize their treatment and Care Team contact information on the site. If the patient is unable to keep their information updated, or if they just want some assistance doing so, they can designate someone as a Caregiver to provide that help.

A user who is a Caregiver for someone on Navigating Cancer will have an additional “Organizer” tab for the person they are providing care for. This makes it easy for the Caregiver to switch between their own information (on “My Organizer”) and the patient’s information that they’re caring for.

Other Highlights

Other enhancements in this release include:

• Dashboard Page – The Dashboard is the first page you see when you click the “My Organizer” tab. This new page displays a summary of activity for the people and groups you’re connected with on Navigating Cancer. It also features a mini version of the Daily Health Tracker to make it easier to capture quick entries when you sign in.
• Common chemotherapy regimens listed for specific cancers. In the Treatments section (on your My Organizer tab), if you add a chemotherapy treatment, you’ll now have the option of selecting from common chemotherapy regimens for the type of cancer you’ve saved in your site settings (of course you can also create a new regimen if yours is not listed). Selecting one of the regimens in the list will automatically list each of the chemo drugs for that regimen.
• Schedule & track your treatments and medications. When you add a treatment or medication to your Health Records section (also on your My Organizer tab), you’ll see an option to “Add to my Daily Health Tracker and Calendar”. If you do this, you can easily set up a schedule to create reminders for your treatments and medications on your calendar and Daily Health Tracker.
• Health Tracker Reports are also new in this release. If you’ve been using the Daily Health Tracker to record your general health or side effects, you can now see a summary report for the previous 1, 2, 3 or 4 week period. The report summarizes the areas you’ve indicated are going well and highlights those areas where you’ve reported issues. The benefit of the report is that it can help you and your doctor pinpoint relationships between your symptoms and side effects, and any medications, treatments or other activities that you may be doing.
• Prepare For Appointment report. While this is just a first step toward the functionality we’re working on, this report provides a useful tool to help you communicate effectively with your doctor. The Prepare For Appointment report includes a summary of your information from the Health Tracker Reports, and provides an area for you to record specific questions you want to ask your doctor. Print this report and take it with you to your next appointment so you can recall and record important items for discussion.

We are excited about introducing these new capabilities and look forward to hearing from you. We know that this release introduces many changes and that it may take a little time to get used to. We thank you for your patience and willingness to try out this beta version of Navigating Cancer. We strongly encourage you to share your thoughts and suggestions to make it even better and more useful for you and other users over the coming weeks and months. Send feedback to us at feedback@navigatingcancer.com.

Thanks!

The Navigating Cancer Team